Sticky Blood-Hughes Syndrome Support
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Extremely heavy periods - despite interventions - any advice?

Since taking warfarin my periods have, unsurprisingly, got heavier. Last year they became extremely heavy, to the point that I was referred to a gynaecologist. In addition to the warfarin, I have fibroids - which can cause heavy bleeding. Anyhow, a Mirena coil was fitted to try to sort it all out and then I had 2 blissful, light periods and felt quite delighted with life. Then a moderate one. And now, 3 months after the fitting, the heaviest period I've ever had, with frequent, huge clots.

Given that there are probably a fair few women with Hughes and also a Mirena coil, can anyone advise me if this is part of the 'bedding in' process that the accompanying info leaflet says can occur in the first few months? I today saw a nurse and GP - the GP thought it might be, the nurse later said she thought not and that the coil isn't working for me and that it should be back to the gynae for an ablation (just the thought makes me feel weak....).

Also, the GP prescribed Mefenamic acid - on the basis that I will have my INR re-checked in one week's time. I've seen a couple of posts on this forum re this drug - there seems to be mixed reactions to it, plus views as to its suitability for patients taking warfarin. Any further advice/input that anyone has to offer would be very welcome.

Many thanks!

14 Replies

I have a Mirena coil and it has helped me a lot! I have read that if heavy bleeding occurs with it, it might be some complications. I would look for a doctor who examines properly for example ultrasound. The coil could have made a hole or it could be something like infection. I am not medically trained, just thinking it would be worth checking, just in case. Take care!


There may be other things that you need to look into but I would strongly consider the ablation, if you don't plan to have more children, for it isn't reversible. I had it done when I was about 45 and it was the best decision I have ever made. My gynecologist suggested it when it was found that I had a cyst. This is what caused heavy bleeding and a period that was still going strong after 4 weeks.

Sorry, I have no experience with the mirena coil.


Hi there, I had the mirena ten years ago for exactly the same reason and it didn't work for me at all. Two years later I had ablation, the best thing I ever did! I've not had a period since and it has slowed down the growth of my fibroid. I also tried mefenenic acid tablets, but that was before I knew I had APS. Being as it's an NSAID drug like ibuprofen, it's not usually recommend for people on warfarin, as it can increase bleeding. Ablations have progressed even further than eight years ago when I had mine. It's a simple procedure and recovery is quick, usually a week off work, instead of six with a hysterectomy. I would definitely recommend it, it's drug free and won't interfere with warfarin.

Hope this helps, good luck



Hi, I had very similar problems, horrendous bleeding and had to have blood transfusions. I told the doctor I felt that I would bleed to death during the night. They gave me a Mirena and I lost that at some point. Huge clots. Permanently tired because of anaemia. My gynaecologist suggested an ablation, a new operation at that time. It was extremley successful for a couple of years and then it all started again and so I had another ablation. The two operations differed slightly in method, I think one was a heated balloon and the other a microwave/heated wire. I haven't had any problems since. Recovery was quick and in all pretty painless afterwards. I can't think why anyone would want a hysterectomy when ablation is an option. Good luck with whatever you decide to do. Lx


Hi, my gynacologist said it could take up to 6 months for the coil to settle. I take aspirin and Mefenamic also. It is an older anti inflammatory medication that use to be given to women with heavy cramping during their period. It is less hard on the stomach than some of the newer ones. My coil has only been in for 2 months and, although, I have Hughes, I have no fibroids. I say, go with your gut instincts. If you don't think it's normal, it probably isn't. Also depends if you are of child bearing age. I am no longer in that category. Good luck with all of this. It is hard for us because it seems like every procedure gets complicated.

Go back to your gynacologist. She/he is the specialist, not your GP.


I had horrible periods as described by many on here. I had an ablation years ago. Best procedure ever!!! I do get some minor menstrual cramps at that time of the month but not a drop of blood and I'm not physically drained from losing a lot if blood.


I must in be a minority. I have a fibroid and have had the opposite experience whilst on anticoagulants - significantly reduced bleeding/not passing clots. Don't think the Haemotologist actually believed me when I told them because they must be used to frequently hearing patients report increased bleeding.


Not to scare you…My wife (does not have Hughes or on thinners) had a uterine fibroid apparently for a long time. She also had heavy bleeding including heavy clots. The fibroid grew quite large. Glad she had it removed in one piece because it was a very rare cancer.

If you decide to have it removed, IMO, do not, do NOT, allow a surgeon to perform morcellation.

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Hi I have posted on this very subject, so if you search heavy periods my experience and comments should come up.

I had similar experience.

Basically you should push for an ablation ASAP if you have finished a family.

If not you can use progesterone to slow bleeding, but have to balance with clot risk, even on blood thinners.

As I understand , mefenemic acid is a no no.

As your blood count will be reducing, anaemia is a real risk, so I was on ior tablets and really supplementing my diet with iorn high juices but still ended up in a bad way in only a few months.

Good luck


Read up on the after effects and what happens when you remove the Mirena Coil.... If I knew then what I know now I would never of had one inserted.

I would advise everyone who is consider one to be tested for APS before they do so.

I had it inserted at the same time as the removal of 2 Fibroids unfortunately not all were able to be removed as they are in the walls of the uterus.

The Mirena was to manage heavy and painful periods I was 42 at the time.

After a few months of adjustment I settled in to the relief of No periods at all.

This insertion however coincided with the onset of side effects I now know to be the worsening symptoms of APS.

For 3 years I had no periods but I'd started to have neurological issues and parkinisms starting with a tremor and dizzy spells. After bumbling around Neurology for 2/3 years and a diagnoses of Dystonia and Chorea I demanded a referral to Rheumatology.

in my search to find out was was wrong with me I had the coil removed. Thats when the real fun began.....

I bled 3 years worth every day and clotted shockingly for 6 months. I thought I was dying... (this was before my official APS diagnoses)

My GP put me on Tranexamic Acid / Norethisterone all medications usually used traditionally to stem the flow and the medications i'd been using for years before the Fibroid removal and initial insertion. After my first Rheumatologist visit and they suspected APS I pointed this out to my GP but until I had that official diagnoses they just said keep taking the tablets.....I didn't as in all my research of APS had put the fear of god in me regarding clots/ strokes and heart attacks.

I now know those meds to be inadvisable for those with Hughes Syndrome.

The prolonged bleeding is customary with the Merina removal and the side effects even have their own name ' The Mirena Crash' Google is a wonderful tool I just wished I'd used it.


Mirena Crash - blimey! Certainly, I didn't realise that my body was capable of bleeding and clotting like it did after the coil expelled itself. I, too, thought I would bleed to death.

I'm now on Provera (I'm on warfarin and have my INR checked weekly) until an MRI scan is done to give more detail re my fibroids, with a view to solving my issues with an endometrial ablation.

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For me having the contraceptive implant helped me.


I have had 3 coils in 2 1/2 years. All awful. Bled more than I didn't. Then after that, an ablation with another coil for good measure. Bled more than I didn't. Body still obstinately bleeding, whenever it wants and as much as it wants. For me, neither of these have worked. I am worn out with it and sick of it. Hysterectomy please.


I've now had one. An excellent decision for me. I was, like you, at the end of my tether, starting to become depressed, and in and out of A&E nearly every week. Good wishes; I hope you will get a swift resolution.


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